I know, I know, running behind....

We're happy, no ecstatic, to say that I had a clean PET scan about two weeks ago. Sorry for not posting it a bit sooner.

Shannon is getting back into soccer on Thursday nights. Yeaaaaahh!! (It's midnight and she's still out for a pint with the old timers from her team as I write.) There is some normalcy reentering our lives. Playing with the kids is getting much better each day. Eating is a little weird for me, smaller meals a little more often. I miss chugging a cold beer on a hot day. Small sacrifice I guess.So I guess it's about time to become a productive member of society again. Any suggestions?

At the time of the diagnosis last year, I was staying home with Molly 3 days a week and doing projects the rest of the time. With the addition of Dave, Kristine and Logan Nixon (cousins from the frigid North,) to the extended household, I've been relieved of my stay-at-home duties. Logan and Molly have a beautiful kind of tug-of-war relationship. Kristine has Ian and Miles developing their craft skills and their listening skills as well. (A work in progress.)

Actually I'm going to get started on a new adventure if my friend will still have me. I've been approached to design and see through the construction of a home for a friend who invested wisely in a little cottage across the street from the water in West Seattle. I have some sketches developed and a lot more to get down on paper. Most of you know that I've carried a passion for Architecture for.......ever.

Wish me luck.Keep in touch, everyone, and we will too.

Dave and Shannon

How Y'all doing?

Well, since Shannon seems to have gone an a literary hiatus, I guess it's my turn.....
Quick medical update goes like this: I'm 3 weeks into a 5 week run of chemo-therapy, should be my last. Nausea is a little worse this time around, good drugs but there are times when I just can't hold it down. Enough said. I will be getting a PET scan in a month or so, if we all hold our breath together we'll have good news. The nightime tube feeding went by the wayside last week, a bit earlier than expected. While pushing Molly up to The Dapple (local market) in her stroller, the damn thing just plain fell out....bloop....ten inches of tubing. I went to the surgeon's office the next morning and was met with stares of incredulity. They wanted to put it back in but I lobbied for freedom and they said o.k. Now it's up to me to get 2000 calories a day into my newly remodeled stomach. So far so good, I've been gaining ~1Lb. per week since the surgery and funny enough, I'm at 175 which is a good target weight to stay at. (For the first time in about 10 years.)

There is a bit of normalcy re-entering our lives. I did my first homeownerish project in a long time...put in a new garbage disposal downstairs and did a little weeding in the yard.

The boys are ready and waiting for summer vacation, they'll probably take swim lessons again, Ian has a week long sleep over YMCA camp in late July, he's excited as can be. I've been taking the boys to school most mornings, picking them up sometimes. Our cousin Kristine, her husband Dave and their 2-yr. old Logan moved in to the downstairs apt. and Kristine is taking excellent care of Molly 3 days/week. Molly and Logan have a great chemistry with the occasional toy induced swipe to the face. Molly is talking up a storm, it's especially cute when accompanied by a wagging finger. Such as "I no ready for night-night!!"

Shannon, ah, Shannon. Some of you got to know her much better over the last few months. I'm elated, wish the circumstances could have been different. So you see what I see in her. She's been my rock, my nurse, my day-to-day reality check and most importantly, my best friend. When this is all over, I owe her a big, long, relaxing vacation to someplace warm with very cold Margaritas.

Sorry for the five week bald spot in the blog. We'll try to maintain it a little better. Thank you to everybody for the cards, e-mails, messages and visits, they have been an integral part of seeing the light at the end of the tunnel.

All my love, Dave

Better Every Day

Things are really starting to feel like they are getting back to normal. Dave's energy is getting better each day. He still needs to take a couple of good naps (or just some down time) every day, but overall he's staying up longer and his naps are getting shorter. He's been eating really well too. His portions are small (as they will always be due to the new architecture of his esophagus/stomach), but he's eating frequently and eating all the same stuff I eat. His weight has been stable since he's been home from the hospital (he's lost close to 40 pounds since his diagnosis in November), and now his challenge will be to start eating some of those 1,000 calories he's getting from the tube feeding each night so we can start to phase that out (probably over the next month or so).

Although he still looks very thin (his cheekbones have become quite prominent), he is starting to lose that certain look that is really hard for me to describe. It's almost like his face looked partially paralyzed and he was very robotic and just kind of odd looking when he first got home from the hospital. I'm glad his sense of humor has returned because he didn't even get offended when I'd sing "Domo Arigato Mr. Roboto". Yes, it's true, I have a juvenile sense of humor (that's why I get along so well with the 5 and 6 year old set).

Dave drove his car for the first time in a couple months. That felt like a milestone. He's been off the pain meds for quite a while now, so there was no medical reason he couldn't drive, but he felt like his reaction time was slow and his movements were stiff. This morning, however, he offered to drive Miles to school and I felt totally comfortable taking him up on it. I don't think he'll be taking any solo roadtrips in the near future, but it's nice to know he can do some driving if he wants/needs to.

Now that things are getting better, we have the dreaded appointment with the oncologist on Thursday. I have a feeling Dave will be starting chemo within the week. We're both hoping he can take the chemo orally or go in for infusions rather than have the 24/7 pump he had last time (it makes showering and just about everything else a pain in the butt), but we'll have to wait and see. Wish us luck.

A better day...

The last couple days have been, dare I said it, pretty good. Dave has been out of bed more and has gone for some good walks with me and the kids (the library, Ian's school, the grocery store). It has helped that the weather has been more cooperative. He had a CT scan yesterday to check the fluid in his abdomen and get a look at how his swallow function is working (yum, more barium to drink). The surgeon was very pleased with the results. There are no new pockets of fluid, his lungs look great, and he's swallowing perfectly provided he's sitting or standing and not hunched over too much. His list of meds is finally starting to diminish. He's completely off pain meds, the doctor just took him off the oral antibiotics, and he'll get his last dose of IV antibiotics tomorrow morning. There's still a small wad of pills he is taking, but I figure each time we can say goodbye to one more drug, it's a small step in the right direction.

I think it was good for us to talk with his surgeon yesterday because we both got a chance to ask for a bit of a reality check about whether my expectations are reasonable and just how much time he should be out of bed versus the time he spends in bed. I think the hardest thing for me is that right now to him bed seems like a big reward. Go for a walk, reward yourself with a nap. Fold some laundry, take a nap. (I guess I should also say I've never been a napper and I like to stay up late. I remember being about 10 years old and reading that Margaret Thatcher sleeps for only about 4 hours a night and thinking I wanted to be just like her. Unfortunately, I can now say that I've had lots of four-hour nights lately and I pretty much just feel like crap in the morning.) The doctor said if Dave is up and moving around (sitting on the couch doesn't count) at least four separate times for at least 20 minutes each day, I should let him nap as much as he wants the rest of the time. Ok, message received. However, the interesting thing is that I have completely quit giving him "the look" when he's in bed, but he now seems more motivated to get out of bed on his own. Go figure.

That's the end of the Dave update. The next paragraphs are kid bits I can't help but share, so if all you want is the update on Dave, stop reading...right...now.

Last night when I told Ian it was time for a bath, he told me he wanted to be a stroker. I must have given him a quizzical look because then he asked me what the word is for someone who takes their clothes off in front of people. Of course, by this time I'm wondering where he's been picking this stuff up, but I went along with it and offered up the word stripper. A bit more dialogue and I realized he actually meant streaker, not stroker (I could use my imagination to come up with a definition for that) and not stripper. He asked me if I'd ever seen a real streaker. I told him that I hadn't, but that Dave and his brother John were at the last game the Mariners played in the Kingdome before it was imploded and a streaker went running across the field. Dave pipes in with, "Yeah, but he had a sock tied onto his wiener" (yes, proper me, I cringe every time someone uses an incorrect word to describe one's anatomy). About five minutes later, after getting Dave set up in bed with his IV, I find both Ian and Miles naked in the kitchen trying to attach socks to their penises (peni?) with sandwich ties. Never a dull moment.

Molly got her cast off on Monday. Pure trauma. I think the trauma of the saw and the repeat x-ray was far worse than breaking the bone in the first place. And if I thought we might get a break after getting the cast off, I was sadly mistaken. Molly had a slight fever for a couple days and then got a rash that covered her cheeks, arms, and legs. Turns out she has Fifth Disease, which sounds really nasty, but is a very common childhood virus that is typically quite mild and not contagious as soon as the rash appears (really).

Ian barfed at school today and was sent home after lunch. Actually, the nurse drove him home because I was at work and Dave still isn't driving. He seems totally fine. Mainly, he just enjoyed an afternoon on the couch watching a movie and then was back out on the playground this evening.

This morning when I dropped the kids off at school, the power door on our van was getting hung up on something. Miles looked at me and totally seriously said, "Mom, I think this car is getting pretty cruddy. You should list it on Craig's List." Miles and I have been diligently checking Craig's List for the last week or so looking for a bike for him.

Very slowly, I think things are starting to return to something resembling normal. We see the oncologist on Thursday, so we should know then how soon Dave might be starting more chemo. Dave actually read the last couple blog entries (I think he was nudged that way by a friend) and all the recent posts. I'm hopeful he'll take a whack at the keyboard SOON!

April 1

Wow, it's hard to believe it has been an entire week since I last posted an update. I've been kind of boycotting the blog (first unconsciously, then consciously) in hopes that Dave would sit down and type his own update. I keep casually mentioning it to him, pointing out that it's been several days since I've updated, but so far he hasn't shown a lot of interest. It's funny because he feels strongly about me posting regular updates on his blog, yet he hasn't been too keen on taking it over.

Dave's been home for 10 days now. Some days are pretty good and some days are hard. Our sister-in-law and niece were in town for the weekend, and it was really nice to have some help with the kids and with Dave (thanks again Lori and Erin). I think having people in our house encouraged him to stay out of bed more and to do a little more walking and engaging than he otherwise might have done.

Tonight, as I was flushing his IV and getting ready to start his antibiotics, he commented that I must be really lonely. I don't think I've cried for weeks, but I kind of lost it when he said that because, yes, I am lonely. I'm very lonely. But, unfortunately, it's not the kind of lonely that goes away by having a drink with a friend. I am lonely for Dave. I'm tired of sharing my bed, but feeling like I'm sleeping alone. I'm tired of feeling like a single parent when he's at home. I'm tired of putting on the brave face when it's not how I feel. I'm tired of updating his blog when he doesn't even care to read it. Most of all, I'm just tired.

Oh, here's my good news: After four weeks, Molly gets her sassy purple cast off tomorrow morning. Anytime someone asks her when she'll get it off she says, "Two weeks, cast off, two weeks." I think she'll be sorry to see it go. I sure won't. I still have a fat lip from getting backhanded by her last week. I can't even remember what I did that warranted the cast to the face, but I'm sure it was something really terrible like trying to change her diaper. Anyway, that's the fat left side of my lip; the fat right side of my lip is from her big head jumping right into my face. No need for collagen here...

Well, that's it. I'll keep working on Dave to get back on the computer one of these days.

Home!

Dave made it home on Friday. Hurray! It's hard to put to words how it feels to have him home. It's great and it's a little frustrating - for him and for me. For starters, when we were leaving the hospital, he asked for a wheelchair. After I gave him the disapproving eye (you know, the one that speaks volumes without you saying a single thing), he agreed to walk to the car. My mantra for him (which I'm sure he's probably sick of hearing me say and which sounds really cliche) is that he needs to be an active participant in his healing. He needs to get out of bed and get back to living his life. In fact, the line that keeps running through my head is from one of my favorite movies, Shawshank Redemption, when Andy says you have to get busy living or get busy dying. Well, I'm ready for Dave to get busy living because I'm sure as hell not going to let him take this lying down. Every time I see him lying in bed during the day I feel like a little piece of him feeling defeated. Well, I am here to kick his butt into shape.

I know he is truly glad to be back home. I also know it's more work than being in the hospital. In the hospital all he had to do was push his nurse call button and they'd bring whatever he needed. If he got out of bed a few times each day and walked a lap or two around the ward, it felt like an accomplishment. At home, I have much higher expectations. Not that I think he should be running a marathon, but I definitely stay on his case to keep him out of bed more than he's in bed.

The medical stuff seems mostly routine. He's mainly off the pain meds now. He still has a couple pills that get crushed up and put in his J-tube. He's on one antibiotic that I give him twice a day through his IV line. He still gets night feedings (back in the not-so-long-ago days of nursing babies during the night I sure never thought I'd be giving my husband night feedings). Anyway, that stuff all seems totally doable, and I think our biggest challenge is going to be finding the motivation to get up, get busy, and get living. My strategy is to be as pesky and annoying as possible so he'll want to get out of the house as often as possible. Kidding, of course.

So, that's it. We're doing fine. Every day there's some struggle and some accomplishment. (Wow, I really have to go to bed. For some reason, while writing that last sentence a Donny & Marie song just popped into my head. Scary.)

Can it be true?

As of this evening, it still sounds like tomorrow is still the big day for Dave's release. Everything looked good with yesterday's CT scan, but the doctor has ordered another swallow test for tomorrow morning (apparently there's a little glitch with food pooling in the bottom of his stomach and then his stomach not completely emptying). It didn't sound like it would potentially keep him in the hospital any longer, but that the doctor just wants a look to see if there's any fine tuning they can do.

He also got the dreaded back drain pulled out today. He remarked on how comfortable it is to lay in his bed now. Hurray! I'm stoked to think he'll be coming home with no drains. On Monday, it will be six weeks since his surgery, so I know he's done a lot more internal healing during these last three weeks he spent in the hospital. He'll also be coming home with the PICC line so he can stay on IV antibiotics for the next two weeks. The feeding tube stays as well as he'll need to get 1,000 calories of "food" for 10 hours each night.

Although he's been given the green light on the soft food diet, he hasn't had much of an appetite and has also been feeling quite nauseous (a side effect of the antibiotics, we're told). It also doesn't help that if he feels like eating, he places an order with the hospital room service and then has to wait 45 minutes to an hour for his food to arrive. By the time the food shows up, he's tired and not much interested in eating. I'm sure that will change when he's home. I'll be hitting the grocery store early tomorrow morning for all his favorite soft foods - cottage cheese, canned peaches, oatmeal, pudding - yum yum! Ooh, maybe I'll make him a Ben & Jerry's milkshake too. The doctors did say to focus on calories right now and not to worry so much about nutrition since he's getting that via the tube.

Well, that's it (gotta go dish up some Ben & Jerry's). I think my days as a blogger are numbered and Dave will be getting back online soon.